My Little Liliana

Even though this button is a lot easier to hide compared to Liliana’s tube, it’s actually a lot messier. There’s a message board that I sometimes read called Babies and Children with a Feeding Tube, and a lot of the parents on there that have buttons are saying things about discharge from the stoma and using gauze or “Button Buddies” around the button to keep it clean.

I wasn’t told at all about the extra discharge that would happen now that Liliana has had her button put in! I told Sean that the nurse who made the button change didn’t really tell me much about maintenance and care of the button; no instruction sheet was provided either.

So now Liliana has been getting the area around her button moist with this discharge; sometimes it will dry out and form a little crust on her skin. The big problem is that since there’s a hole in her skin, the body wants to repair the hole. Add in moisture (the discharge) and darkness (we keep it covered), and something called granulation tissue forms. It’s basically skin that’s trying to cover the hole.

And now Liliana has some of it.

I’m going to try to keep the site as dry as possible to prevent the granulation tissue from growing even bigger. I’ll call Friday to see if we can get a prescription for a steroid cream that’s supposed to help shrink the tissue. If the tissue gets any bigger, they have to burn it off with silver nitrate.

In any case, I’m wondering if I should invest in these Button Buddies that the moms on that message board are raving about. They’re cloth pads that velcro around the button and they absorb the discharge from the stoma. Judging by how much moisture we’ve seen come out in only the past 2 days, I think I’ll have to.

Also, I am now 6 cm dilated. On Saturday I’ll be 39 weeks, so really, Damien can come out any time now!

Sorry that today’s post is a little late! Liliana actually slept in this morning, giving me a chance to do the same. Unfortunately, now that we’ve moved Liliana back into the crib and she’s been having teething/gagging problems, she wakes up in the middle of the night crying and wailing. As a result, the past few nights haven’t been very restful for anyone except the cats.

Liliana’s teething is making her drool uncontrollably. We’ve started using bibs again, and she can soak one in an hour. I’ve been trying to put her into positions that will let the saliva drip out of her mouth instead of down her throat because she’s been gagging and throwing up all this excess saliva. Thankfully, she has the fundoplication so she’s not throwing up any of her calories, but it’s still unsettling that she’s doing this.

The GI doctor, whom we saw on Wednesday, said that retching with a fundo usually occurs within the first month. He gave us a prescription for Periactin, an anti-histamine that works against nausea and vomiting, and we should be able to pick that up sometime today.

Apart from that, the doctor said we should watch out for symptoms of cholangitis. Since Liliana’s had her common bile duct removed due to the choledochal cyst, the liver is attached directly to the duodenum. Bacteria can enter the liver from the intestines, causing a bacterial infection. Symptoms would include vomiting, fatigue, fever, jaundice, yellowing of the eyes, chills, and abdominal pain. I was a bit surprised that no one had told me about this before, as it seems to be a serious thing.

Liliana has been sleeping a lot, but it could be that her nighttime sleeping schedule has been thrown off or that her teething and/or growing is taking up a lot of her energy. She really hasn’t been her cheerful self much, but the few times I’ve taken her out this week she’d babble like she normally would, saying things that sound like, “What’s that?” She was really interested in the icky rain we had to go out in on Wednesday. And even though she’s been sleeping a lot, she hadn’t fallen asleep in the car once this week. Car rides usually make her sleepy.

I need to finish this up, so I’ll post some pictures and give a short Damien update!

Liliana’s hair is so crazy because she had a bath this morning.

This has been her expression for the past few days. "Drooly"

"Oh, is that the camera?!"

Looking so sad at the crushed fortune cookie.

Yesterday I had my OB checkup and my cervix is now 4 cm dilated. I had a few contractions last night, so it could possibly be even more dilated! In any case, tomorrow marks 38 weeks into this pregnancy; Damien’s coming soon!

Yesterday we gave Liliana her first tub bath in a long time. Her hair is looking much better (sponge baths just don’t cut it for how long her hair is getting!) and she liked splashing the water around.

After the bath we changed the dressing around her G-tube that keeps it in place. The place where the G-tube goes in is called the stoma, and last night it was looking a bit reddish. It’s normal to have a little redness at the spot, but I’ll have to check today to make sure that it’s not getting more red and that it’s not spreading.

Once all that was done, we tried putting the brace on her. It was way too tight and squeezed her middle too much for me to be comfortable leaving her in it. There also was an issue about how to place her clothing so that we’d have access to the G-tube, and I think the best thing would be to clothe Liliana in tops that open in the front with snaps. I’ll have to call the brace shop today so that we can get Liliana’s brace adjusted; she’s definitely getting heavier so I’ll have to make sure they make the straps long enough that we can adjust them ourselves as she gets bigger!

Apart from that, Liliana’s been on and off with her oral feeding. On Saturday she ate a bunch of oatmeal and later ate some of the leftover corn casserole from Thanksgiving. Liliana came over to me while Sean and I were eating, and seeing as we were on the couch (our coffee table lifts up and serves as our dining table), Liliana was able to reach over enough to touch my plate.

She was trying to grab some stuffing I had made to go with the meal; I didn’t want her having it because there were a lot of different things in it we haven’t had her try before. Instead, I got some of the softer parts of the corn casserole and popped it into her mouth. She ate it without a problem and she wanted more!

For the next ten minutes I was there sticking pieces of corn casserole into her mouth. She tried grabbing a few pieces; when I let her have them, she threw them on the floor. I accidentally gave her one piece that had a corn kernel in it. I think when she figured there was something in her mouth that she couldn’t mush to oblivion, she spat it out. So all in all, she did really well.

Not so for Sunday and this morning. Sean tried feeding her oatmeal yesterday and I tried today; she didn’t want any of it. Maybe the oatmeal is too bland for her now or she wants something with more texture. I’ll have to try a different food later today to see how she does.

In other news, Damien has been very active. Can you believe that there’s only 2 and a half weeks until my due date? I can’t!

I hope everyone had a great Thanksgiving! We spent ours with Sean’s family and we all had a good time.

Liliana’s doing much better with eating solids. Yesterday she ate oatmeal and apples in the morning (about 3 ounces—almost the whole jar!), mashed potatoes during Thanksgiving dinner, and then later ate small pieces of banana. Sean’s mom and I tried getting her to pick up the banana pieces herself, but Liliana preferred to have her grandmother put them into her mouth. Liliana enjoyed it very much and chewed each of the pieces before swallowing.

I’m trying to make more of an effort to feed her solids regularly, so this morning she had some baby oatmeal. I think she’s progressing well with these oral feedings; she opens her mouth when food approaches and she seems happy during the feeds (until she gets tired of it).

The next thing we have to work on is drinking. I did get some WIC checks for whole milk, so we’ll use that for her “drinking lessons”.

It’s been two weeks since the surgery, so technically we can start giving her tub baths and putting the brace on her. I think, to be safe, we’ll wait until tomorrow or Sunday to start doing that. That way I’ll have Sean’s help (he’s working today) and it won’t be a big hassle to go to the hospital if her tube accidentally comes out!

As far as news on Damien goes, he’s doing fine in my (really big) belly! After some discussion on the delivery with Sean, we’re going to try it the natural way first. My scheduled C-section has been canceled so it’s anyone’s guess when Damien will be born. The OB did check me on Wednesday and she said that I seem to be 75% effaced and 1-2 cm dilated. She said that was fine, and she also gave me an order for an ultrasound to see how big the baby currently is. The only way I’ll be able to do an ultrasound though is if there’s an open appointment in the early morning; even then, I already have 3 other appointments this upcoming week. Busy busy!

Okay, picture time. These are from yesterday’s breakfast!

Eating oatmeal-apple puree while it snows outside

Ommm.

Sean trying to get Liliana to feed him. It didn't work out (I think).

Baby Fashion Trend: The Goatee Made of Food

We went to see the pediatrician this past Monday for Liliana’s one-year check-up. Her stats were the following:

• Height: 2′ 2.13″  | 0.59% of growth percentile based on length-for-age
• Weight: 14 lb 12 oz | 0.03% of growth percentile based on weight-for-age
• Head Circumference: 17.32″ | 19.78% of growth percentile based on head circumference-for-age

Her weight gain is still not where it should be, but according to Liliana’s curve, was much better than it was over a month ago. Her curve also showed that her growth height-wise has slowed down a little, but her head circumference growth is doing well.

Liliana’s been having the occasional reflux this week, and there doesn’t seem to be a clear cause for when she does throw up. I can’t imagine slowing down the feedings any more, and I’m not even sure if that would help Liliana with keeping her food down. Her belly has been getting bigger, though, and her ribs look like they have meat on them; much different from when she was on Elecare.

As far as Damien news goes, I went to the OB yesterday and said that we want to deliver via C-section. The doctor was a bit incredulous? skeptical? about doing a C-section for a 7-lb baby, but I wanted to be on the safe side. The office manager will be scheduling it for me around my 39th week; I hope I last that long!

There is still a ton of stuff to do before we’re ready for Damien. The nursery is an absolute mess because it’s full of boxes of Liliana’s medical supplies and a big box of size 3 diapers we bought because we thought Liliana would be gaining weight at a faster rate than she is. Hopefully I won’t have much work to do tomorrow (which is unlikely with how many projects I have) so that Sean and I can clean the house together; next weekend is Liliana’s surgery and recovery.

I did make a Babies”R”Us registry for Damien, which can be found here. Washcloths, diapers, a thick hooded towel and a wipe warmer (it’s only Fall and it is already too cold!), that’s all.

Okay, it’s time for the photos! Last Sunday we took Liliana to a farm as a way of celebrating her birthday.

Sean and Liliana on the cow train

Liliana hanging for dear life onto Sean! It was really cold that day.

Is her face getting fatter?

I don't understand where she gets the cuteness from.

We're on a hayride! It was really...uncomfortable. And rickety.

We saw sheep, a cow, and some goats! The brown one has only 3 legs.

This one tried eating Liliana's blanket.

Riding a cow...

Close-up.

Liliana and the grandparents being silly scarecrows.

At the grandparents' house and going to eat a cupcake

Sean helps Liliana take the first bite

She's surprised at the taste of everything; doesn't like cupcake that much but will eat the frosting. Here she's pointing at some frosting on her pants.

Concentrating on the frosting she has on her fingers...and those big bites out of that cupcake? Sean.

It’s time to give Liliana her medicine. The next feeding will have some Pedialyte in it because she threw up a few times this morning. Gotta go!

Ahhh, Friday.

Today was my 2nd checkup of this week. The non-stress test was first this time around, so I get the monitors strapped onto my belly. The fetal heart monitor was showing a heart rate ranging from 160-180 throughout the 20+ minute test, which was a bit high compared to previous tests. The midwife took my temperature to see if that was the cause (higher temperature in the mother can possibly make the baby’s heart rate increase) but I was normal. She then asked me if I had just eaten something, but I told her that the only thing I’ve had were some waffles around 6:30 AM.

“Waffles with syrup?” she asked.

“Yeah…”

“So that’s why.”

Liliana was on a sugar rush and apparently couldn’t stop bouncing around inside. Apart from my baby’s hyperactivity, the non-stress test showed no contractions! So that was good.

The ultrasound went smoothly. The nurse gave me a profile picture of Liliana, which I may be able to post later if I can figure out Sean’s scanner. The picture itself is kind of funny because Liliana’s head takes up all of the space. She is getting BIG.

Next Tuesday I’ll have another checkup. They’ll measure Liliana on the ultrasound to see what her weight is like, and then later on I’m going to have a meeting with the lactation consultant. Sean will be going with me. Sometime next week, the doctors and midwives will decide on when exactly I should stop taking the nifedipine. The midwife today told me that I probably won’t go into labor just because I will be off the nifedipine.

In any case though, I want this to be over already! Liliana is getting the hiccups all the time and it’s getting on my nerves. She got them last night when I was ready for bed and I had the hardest time falling asleep. It seems she’s most active in the morning and at night, making the afternoon the ideal time for me to sleep — I guess because she’s also sleeping!

All right, I am definitely tired. I woke up at 6 in preparation for my appointment today and for the past few weeks I have been getting up in the middle of the night randomly to go to the bathroom. Sleep hasn’t been all that restful for me, given that my dreams have become so weird and sometimes unsettling. Thus, it is now naptime.

This week’s first checkup went very well. We began with the ultrasound, which took at the most 2 minutes. The doctor checked the amount of amniotic fluid and said it looked good. Of course, Liliana had to show off her breathing! After that was the non-stress test. I had one contraction and Liliana must have been breathing a lot because she started hiccuping.  While you can hear her heartbeat just fine on the fetal heart monitor, you can definitely hear the hiccups.

The midwife told me that they’ll probably have me stop taking the nifedipine at 36 or 37 weeks. It’ll be great to not have to take it every 6 hours (and wake up in the middle of the night to do so), but even with the nifedipine I have had some contractions. Once I stop taking it, I’m afraid that I’ll probably start labor that same day. The idea of going into labor still makes me nervous!

I woke up super early today so it is now time for a nap. Liliana must be sleeping right now as well. Naptime!

Yesterday was the beginning of my 35th week and I am now starting my third week of bed rest away from work. During these past two weeks it seems like I have not done much — I’ve been wasting time playing games on Facebook (if you’re on FB, friend me!), taking random naps, and catching up on all of my reality TV shows. I have done some work, though.

Most notably, I’ve been getting back into web design. During the past two weeks, I’ve designed a new website for myself so I can use it as my portfolio for freelance work. I’ve also worked on some other things, which I can’t exactly recall because of my preggo brain, but I did manage to make a new look for this blog tonight. I’m happy enough with the layout that I’m actually going to start sharing the blog! I may also include the web address with the thank-you notes I have to write for the baby shower my mother-in-law had for me two weeks ago. Yes, I am a horrible procrastinator in all things that are not related to work.

Apart from that, I have been slowly getting the nursery ready. All of Liliana’s clothes are clean and either hanging in the closet or folded into drawers. The crib is prepared, as well as the changing station. The sad thing about all of this is that Liliana will be in the hospital for at least 2 months so she won’t be at home with us as soon as she comes out. I am sure, though, that those 2 months will seem like nothing…After looking back at this pregnancy, it seems like it took no time at all to get to where I am now.

I have another checkup tomorrow morning. Just two more weeks until it’s OK for her to come out, but I think even if she were to come out now, she would be all right. I think at this point in her development, brain hemmorhaging isn’t as much of a risk with ECMO. Nonetheless, I’ll do my best to keep her inside!

Liliana is doing great still!

The non-stress test proceeded perfectly yesterday. Liliana was her usual active self and decided that she was going to kick the monitor that kept track of how hard my uterus was. I did have two contractions while I was there, but they were very mild and did not warrant further observation.

The ultrasound went smoothly as well. Liliana was breathing up a storm and we got to see her chest inflating and deflating with each breath. I can only hope that all of this breathing practice will help her lungs develop into a normal size after she is born.

Tomorrow will be 35 weeks so there are only a few more weeks to go!

Being a patient at CHOP and having a baby diagnosed with CDH, the doctors told me that I would have to come in twice a week for checkups once I got to 32 weeks. So at 32 weeks and 6 days, I went in with my husband for an ultrasound and non-stress test. The ultrasound went fine, but during the non-stress test we found that I was having regular contractions, most of them I could not feel.

To be on the safe side, they checked my cervix. Uh oh, it was dilated 2cm! Thus began my 28 hours of being at the hospital on observation. I had been scheduled that day to take a tour of the Special Delivery Unit (SDU), a special 8-room facility made just for mothers carrying babies with birth defects. Needless to say, my tour was going to be a very long and personal one as I was going to stay in one of the rooms overnight.

I had an IV inserted into my hand to keep me hydrated (dehydration can cause contractions/early labor) and had 2 monitors strapped onto my belly. One is for the baby’s heartbeat and the other is for contractions. Whenever I had to use the bathroom, we had to unplug the IV machine from the wall, unplug the monitors from the recording machine, and I had to shuffle to the bathroom wheeling my IV around with the monitors hanging about my neck. It was very inconvenient.

Having been on observation for a few hours already, they checked my cervix again. I was dilated 3cm! They talked about putting me on magnesium sulfate, but after seeing my contractions eventually subside, they decided to give me nifedipine. They also gave me 2 shots of a steroid to help with the maturation of Liliana’s lungs.

Various people came in to see me throughout the day — doctors, nurses, my case worker at the hospital. A doctor from the NICU had come and talked to us about why it was so important for me to not go into preterm labor. He said that ECMO, which is the process of oxygenating the blood for the baby and pumping it back in, would not be available to Liliana if she were born too early because of the risk of brain hemorrhaging. We figured that Liliana’s survival rate, if she were to be born premature, would be very low.

While the pelvic exams were uncomfortable and the situation somewhat critical in that we needed to stop me from going into labor, that wasn’t the worst thing for me that day. For some reason, I wasn’t allowed any food. Maybe the hospital has a policy on no solid food during labor, but I was starving! I had breakfast at 7 that morning and by the time I was allowed food, it was around 4 PM. I went that whole time drinking only water and juice. I must say the saddest thing is a pregnant woman who isn’t allowed to eat. When I finally did get to eat, it was a mediocre supper. Luckily, I chose something better for dinner.

Anyway, I was kept overnight and they checked my cervix the next day. There were no changes so I was discharged with a prescription for nifedipine and a doctor’s order for bedrest, which they recommended until I gave birth.

I’m still going for my checkups twice a week and have had a few irregular contractions. My next checkup is tomorrow and Sean will be coming with me, as he did last week when I got put in triage for observation (yet again!) because I was having contractions. Thankfully, it only lasted a couple of hours this time.

Will update when I have any news!